Support Communities - Rare Diseases

Connect with rare disease communities and groups near you in Ireland

Campaign Partners

RDI – Rare Diseases Ireland

Rare Diseases Ireland (RDI) is the national alliance for rare disease patient organisations in Ireland, working across all rare diseases to improve the lives of the estimated 300,000 people living with rare diseases in Ireland.

Our vision is a country where all people living with rare diseases live longer and better lives, reaching their full potential, and are included in a society that leaves no one behind. This means we want equity for people living with rare diseases in Ireland – equitable access to diagnosis, treatment, health and social care and opportunity.

Rare Ireland

Rare Ireland is a national network of patients, families, and healthcare professionals working together to improve the lives of people living with rare diseases in Ireland. Rare Ireland's mission is to promote awareness, research, and support for rare diseases in Ireland.

National Organisations - Childrens Ambulance Service

Ataxia Foundation Ireland (AFI)

Ataxia Foundation Ireland

Cystinosis Ireland

Cystinosis Ireland

Irish Lung Fibrosis Association

HHT Ireland

Epilepsy Ireland

Dravet Syndrome Ireland

Muscular Dystrophy Ireland

The Irish MPS Society

Sickle Cell Ireland

Spina Bifida Hydrocephalus Ireland

Vasculitis Ireland Awareness

Tuberous Sclerosis Complex Ireland

Cystic Fibrosis Ireland

22q11 Ireland

Global groups

EURORDIS - Rare Diseases Europe

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 944 rare disease patient organisations from 73 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.

This campaign is funded and initiated by Takeda Products Ireland Ltd, in partnership with Rare Diseases Ireland and Rare Ireland.

C-ANPROM/IE/RDG/0057 | February 2024